I woke up with a bit of a start at 2:23 Saturday morning, after the first week of school. That was the moment that the new school year hit me like a ton of bricks. That was the moment it dawned on me, really, that this is the first time Oscar has been in a school setting where no one knows him already. In our district the transition from second to third grade means moving to a new school building. Yes, his PT (physical therapist) knows him, and this is huge, because she holds a ton of knowledge about his needs and has the skills to provide training to others. But she is not in the classroom with him—and she is not even in the building every day. My head was spinning about third grade for a good two hours in the very early of Saturday morning.
I found myself wondering what it must be like to be the family that goes to the evening orientation in the spring, receives teacher placement in mid-August, visits the teacher and drops off supplies in late August, and sends their kid off on the bus on day one. We did do all of these things. But our circumstances require much more of us.
Most kids have a teacher. Oscar has a team (teacher, one-on-one aide, occupational therapist, physical therapist, and often the school psychologist and/or assistant principal joins in). We started preparing for third grade in the winter of second grade. In the spring David and I toured the new school with the assistant principal. Then we had a team meeting, then the CSE (Committee on Special Education) meeting in May (attended by Oscar’s second grade team plus OT for third grade, assistant principals from both outgoing and incoming schools, and the Pupil Services Director for the district). This is the annual meeting where we formally discuss Oscar’s IEP (Individualized Education Plan, which is a legal document stating needed accommodations at school) for the coming year.
Throughout this process we discussed things like accessibility of the new school—including Oscar’s desk and the lunch tables. We discussed gym class adaptations, Oscar’s stander and the two-person lift (Oscar now weighs enough that by OSHA guidelines one person is not allowed to lift him to transfer him), what kind of testing adaptations we want to lay the groundwork for, the growing importance of technology in Oscar’s education (i.e. using an iPad with Dragon voice recognition software or Cowriter word prediction software as his writing load increases). We talked about germ control, adaptations in special area classes, a potential modified homework plan. The bathroom was a major topic of conversation. Where would Oscar use the bathroom? Which bathroom would allow him enough privacy, enough space for his wheelchair, and be close enough to his classroom that he wouldn’t miss a lot of class when he goes? Would it be a faculty bathroom or a student bathroom? Single stall or community-style?
We were confident. Things had gone so well with the primary school. We were simply moving to a new building within the same district. And Oscar was excited. He kept saying, “It’s bittersweet. I’m really going to miss Mrs. Beato (his first and second grade teacher), but I’m really looking forward to French Road (the new school).” The meetings laid the groundwork; the next part would be extensive training for staff before the school year started. Partway through the summer I was informed that Oscar’s new one-on-one aide had been identified and that she would come to a PT session over the summer to meet Oscar and begin some training. I was thrilled to begin this process earlier than the last few weeks before school started. It would give everyone (Oscar, the aide, and me!) some breathing room to get acclimated.
As we approached the last week of PT services for summer, which was in the middle of August, I asked, “Which day will the new one-on-one be coming to PT?” I was then told no one had been hired yet. This left me confused, and concerned. It turns out the person who had been selected as his aide had decided to leave the district, and now the district had to go through its hiring process, listing the job for a set period of time before holding any interviews. David and I went into panic mode. How would this possibly allow enough time to accomplish all that needed to be done before the start of the year? We were careful not to show any worry in front of Oscar and remarkably he was pretty calm about the whole thing.
So what does it mean to be Oscar’s one-on-one aide? What is involved? It means providing enough support so that Oscar can be successful at school, can have the equal access to his education everyone else does. But it also means knowing when to step back enough so that he has the maximum amount of independence. This is a very fine balance. If there is a cutting project at school, does one cut out the pieces of the project for Oscar, saving significant time and energy, or let him have the independence and pride of doing it himself, but having him fall behind and possibly have his hands get fatigued? There is no one black and white answer. This is one small question of many that come up each day.
Working with a one-on-one also requires a good bit of vulnerability and trust from Oscar. He is relying on this person to care physically for his body as he would, if he could. To physically move his body through space. To reposition his legs, or scooch him up or shift him in his chair, to get his jacket and other cold weather gear on and off. To take him to the bathroom—which, as he gets older, becomes a more and more private affair. And then to take care of all of the “stuff” in his day: unpack his backpack, set out his snack, put his binder away, set up his lunch each day, uncap his markers, reach the items in or on his desk and around the classroom that he can’t, be on the ready with hand sanitizer at all times. In fact, watching out for germs is a primary piece of the job, since illness can be more serious and more dangerous to a kid with SMA than to a typical kid.
It has been trustfall after trustfall sending our kid out into the world. When he was two we sent him to a special needs daycare that had years of experience caring for kids with much more complex medical needs than Oscar, and which his trusted PT had recommended to us. It was terrifying to let others besides family care for our child for the first time, but we had confidence they were up for the job, and they were. And Oscar loved it!
A year later when he started preschool—a two-and-a-half hour-a-day program—we had countless planning meetings and training sessions attended by what felt like the entire staff of the preschool. Over a period of time Oscar got to know these people, and they got to know him—all before the formal start of the program. Another major step, but one we all were prepared for.
Two years later, the level of planning to transition him from preschool to kindergarten was comprehensive. We had many meetings and many, many visits to the school. Various staff made home visits and visits to his preschool. Oscar had lots of time to acclimate to the new environment and get to know new staff. He also—and this was huge—had one of the special education teachers from his preschool follow him to kindergarten to be his one-on-one aide. So, he already had an existing relationship with the person who would be there for him each minute of the day. She stayed with him all through kindergarten and for the first half of first grade. Partway through first grade she accepted a teaching position within the building and there was actually a period of about a month in which Oscar had two subs trading off days to serve as his one-on-one, before the new person was hired. But even then his teacher, the school nurses, OT and PT and countless other staff already knew him well, and knew his needs well. When the new person was hired she had the A-team for training—all of these people that knew Oscar so well already.
Training. What happened this year, with the hiring of a new one-on-one aide at the last minute, at a new building where no one was yet familiar with Oscar, was that we had three days before the start of school to complete all of the training needed for day one. Oscar and I spent his last three days of summer vacation at school. He and I were both disappointed about this. I took the whole last week off work so we could spend time together. I also knew, long before we knew anything about a missing one-on-one aide, that we would most likely need to spend some time at the school that last week. I just had not anticipated how much.
Oscar loves school and was very excited to meet his new teacher, find out who was in his class and see some friends, so the first day was fun for Oscar. In all we were there for about four hours between the meet-the-teacher hour for everyone, a break in between in which I took Oscar to the bathroom and we learned that the bathroom that had been suggested for his use wasn’t actually going to work (the “accessible” stall was not actually large enough for a power wheelchair)—very important discovery!, a team meeting, and the beginning of training after the meeting. Since Oscar’s new one-on-one was a new-hire to the district she had some obligations to fulfill to complete her hiring process—which were inadvertently scheduled for exactly the same time as the meeting and training sessions. So, we literally met her for 30 seconds that first day. Not cool. Nonetheless we were able to go over some very important information with the teacher, OT and PT, school nurses, school psychologist, and assistant principal. I had quickly typed up a two-page handout of vital information to pass out. And then Oscar’s wonderful PT and Oscar and I were able to demonstrate use of the stander to these members of the team, and to familiarize them with the different functions on Oscar’s chair.
That night is when Oscar got nervous. He had made a plan: he would meet all these new people the first day and get to know them a little, then he would teach his aide and the nurses how to take him to the bathroom the next day, only he hadn’t gotten a chance to get to know his aide that day. I let him know we would all work with him, follow his lead, practice the bathroom without actually undressing at first.
So, the second day we met the nurses and the new aide and the assistant principal in the bathroom (we had finally found the best one to use!) to walk them through all the steps involved in taking Oscar to the bathroom (to honor his privacy I will not share those steps here!). Oscar’s PT then taught everyone how to do a two-person lift, should the need ever arise, and we began training for the one-on-one aide on the stander (this is an involved process that requires a lot of repetition to learn). After about two hours of intensive training that day it was time to move on. Oscar and I had a picnic lunch in the car and then went to buy the few remaining items on his school supply list. Once that was done we had a little spare time before he had to be at aqua PT so I took him out for ice cream. He was exhausted. He could hardly lift the spoon to his mouth and was starting to melt down. He actually asked if we could skip swimming. Our little fish, who would spend 4 hours at a time in the water if he could, who takes such pride in the amazing things he can do in the water, who benefits so deeply from his time in the pool, was done for the day. I canceled an hour before the appointment and we went home and snuggled on the couch and watched episodes of Odd Squad.
The next day was Friday and our last chance to get everyone, especially the aide, up to speed. We spent another couple hours practicing the bathroom for real, practicing going in the stander, and showing his aide how to lift his joystick so he can pull into his desk all the way, how his special set of markers works, talking through sanitizing practices throughout the day, and other little details.
We did it! We got through enough for Oscar to be able to start school the following week. It was intense, exhausting, rushed. But as has been our experience so far in our district, everyone was engaged, thoughtful, dedicated, caring.
There are many important conversations we didn’t have time for, like talking about what SMA is, and what it means for Oscar. Or the sometimes fine line between providing Oscar everything he needs and giving him unnecessary special treatment. Or what kinds of language we have found useful around kids and their questions about Oscar and his chair and other equipment and his abilities.
Oscar is loving third grade. He adores his teacher, who has a similar sense of humor and a fun and engaging tendency toward dramatics the same way Oscar does. They seem to be a great fit for each other. The team as a whole, it seems, is going to be great. There have been some bumps along the road, some of which might have been avoided had we had a slow and steady preparation over the summer, versus a crash course. But Oscar is holding his own. He is speaking out and speaking up, teaching people what they need to know about him, and about taking care of him. I was impressed to hear him report on the first day of school that he had reminded his aide about washing down his lunch table with a Clorox wipe before unpacking his food—I didn’t realize he took the germ control issue as seriously as David and I do! Sometimes I am sure his speaking up is coming out with a bit of a demanding tone. At first I worried about this, and questioned him about how polite he was being. Then I realized, and remembered, he is just barely eight. The fact that he can speak up for himself is tremendous. I certainly didn’t know how to do that at his age. I have always been introverted and those who don’t know me well might even call me shy—or certainly they would have back then. I am so grateful Oscar did not take after me in that way. He will learn the value of being polite all in good time. For now I will rejoice that he knows how to say what he needs, and how he feels. That is a quality that will serve anyone well, but a quality that will serve Oscar—who will have to rely on others for many of his daily needs—especially well.
Since the start of school there have been many emails back and forth, a couple meetings, and many conversations at home. The bonus of our special circumstances is the chance to get to know the adults who are working with Oscar every day in a way that other parents don’t get. And these meetings and emails and conversations have given me and David and Oscar all confidence that he has a great team working for him, with him. Nonetheless I find myself wondering what it must be like to simply follow the standard schedule of preparing for a new school year…